Jump to content

Cast Iron

Advanced Members
  • Posts

  • Joined

  • Last visited

  • Days Won


Everything posted by Cast Iron

  1. Hey SaltLife, My daily dose is 720 divided over three intakes of 240 in the morning, before lunch and after dinner. I have been increasing my dosage since my first diagnosis (was 240mg) as many will tell that one needs increasingly more to prevent the beast coming out. I've been up to 940mg at times, and some have had 1100mg a day, but this can not be done without consulting a cardiologist, in fact with every increase it is good to have your heart checked first (ECG) to see if it technically capable to deal with an increase. Besides this i am in the 'chronic camp' and have more meds as preventive (triptans).
  2. Hello Batch, Thanks for the reply, next time i will ask for the extended test as you advise, also will look into the other supplements. I am not pain free, that's the point. I am in cycle now since June last year without a pain free period longer than 4 days, so technically i am chronic now. I started the D3 regime in March last year and ramped up the D3 as per protocol. In April last year, after 6 weeks into the D3 regime, i dropped one verapamil (from 720 to 600mg) hoping that the D3 would be able to hold the beast at bay. It was not long before the beast came out to play with a vengeance, in the following months I had >200 attacks/month. Still I continued the D3 and the other meds, but had to up the verapamil again to 720 to get number of attacks below 200. Would it be possible that the D3 is just not working for me? Have you seen or heard of similar cases? Take care!
  3. Here’s an update. Having a rough time in ClusterVille that is why I clime in late. I have my recent lab test on the vit D3. I didn’t take the vit D3 for a month and the value remains at 400+, which makes me wonder @xxx Batch. I still take the cofactors so I would expect that the stacked amount vit D3 would be metabolised anyway and should decrease over a month. But is remains at the high level. I am not inclined to start taking the vit D3 again as this might also get stacked on top of the 400+ and would further increase the level. Do you have any ideas? @spiny, yes they do allow to have O2 at home, although there needs to be sticker at your front door indicating O2 is present for the Fire Department in case of a house fire/calamity. On the meds I take, everything of which the doc felt or feels can make a contribution, so that’s currently verapamil (720mg), sandomigran (3mg), naratriptan (2,5), O2, sumatriptan (3mg and 6mg). I am hesitant to drop one as in the past is has shown doing this, the number and severity of the attacks ramp up very quickly into a high cycle with Kipp 8-9-10’s (I am chronic and have low and high cycles). So it is merry-go-round on finding out what works well besides the meds and what not. Although soft drugs are legalised here, I am not the type for busting. It is not much of a life I am living @Sue mcdonald, but adhere to what you are saying. When you can permit yourself to try something else like mineral baths and enjoying the simple things in life, you absolutely should do this. However I am in high cycle now and on a constant watch on what works and what not, so morning walks help indeed to walk off the early one, but after 4 attacks I can solve with O2, the O2 alone does not work anymore and have to use the sumatriptan, often followed by O2 to get the beast at bay for a couple of hours. I would really like to experiment with the things you suggest, but actually scared to do so as I do not know what it can invoke and have had bad clusters when I changed something in my diet for example, so it is not as easy as you say “If u want to eat something? Eat it. Be happy all u can be”. For me happiness is beyond ClusterVille. Thanks all for listening
  4. My finger nails are curved Sue, while my nails on my toes are straight. I do not bite either haha. You mention peripheral tissues…can i mention the excess amount of callusus i have -which i can file quite often but seems not to make any difference because within days its back-or is this not related?
  5. There are two different versions, prednisone and prednisolone. the first is metabolised in the liver to prednisolone. Have taken it multiple times during my cycles but has had not the anticipated effect on me, that is breaking the cycle. With me it only stabilised the number of attacks on a lower number...4 instead of 7 or more when I took it in the high dose period. During the tapering of the number of attacks rose again. However, other people do have the positive results of prednisolone. Pls note that taking predni increases your appetite hugely, so you might gain some weight.
  6. Full blown chronic here too with grey/green eyes. Grey predominantly in winter, green is summer. Some say that the amount of summer light changes the colour. Pupil on the CH side is constricted, but unlike Devonrex very light sensitive before an attack, can really be painful to look into light...especially bright white light, guess it's the blue light for me. But can look into the sun, odd. Also half an hour before an attack become very hungry...graving for fat food...high energy stuff...guess body is anticipating on the energy drain during an attack...afterwards very thirsty.
  7. @Juss Yes that is what we all read on this forum, but I have some concerns with this. If a vast amount of our cluster family is on the D3 it may seem they all suffer from hidden or underlying inflammatory issues and no one has been able to pinpoint which body tissue is attacked by the immune system? Likely that someone is suffering from for example rheumatoid arthritis as it will show quite significantly.. I've been experimenting with foods and nutrients for years now, but have not been able to see my deficits or surplus'. I've stripped by diet of anything that i thought is a trigger, trying to see parallels in food intake and my cycles. To no avail, so considering going vegan. We also agreed that I will be taking a 3month sick leave from the office. Maintaining the delicate balance between office and family is hard & exhausting and not fair to my family, my best hours I spend on office, while after dinner the attacks come and really decimate me until the next morning, repeat. I discussed with Batch last year on my D3 strategy but unfortunately it has not worked out. To gain control again when it went really bad I also had Emgality, GON injection, prednisolone etc on top of my normal medicines. I really wonder what is wrong because this is a mindfuck with attacks
  8. I had my blood tested again as I noticed that I made a stupid calculation error in my daily intake of the D3 regime. Instead of 50.00IU per week, I have taken for several months a daily dose of 60.000IU. So my lab results are now: CRP mg/L 9 25-OH Vit D nmol/L 411 Calcium mmol/L 2.48 PTH pmol/L 0.9 Although PTH and calcium are still normal, my doc urgently suggested to stop the intake of the D3, but will continue the rest of the co-factors. In a month I will do the lab test again to see if the D3 is within the acceptable range again. But I wonder, even with the high level of D3 my 18 month cycle has not come to an end yet. Can it be that for some the D3 is not working? Is there a strong reason to even continue the co-factors without the D3 if you have a healthy diet? Appreciate your thoughts
  9. There is no science behind the intensity of attacks, yet, although I am sure the medical world in the future will also crack this puzzle…the other puzzle is: why does the airflow through the nose aborts an attack in an early stage. They just don't know. With me the intensity is related to the cycle I am in, high or low cycle, and the kind of trigger that sets off an attack. I can have a short 3 to 4 months high cycle of 4-6 daily major attacks with KIP 7-10 (KIP is the pain scale or intensity level), or a low cycle of a year with 2-4 moderate intensity attacks a day (KIP 3-6). Also the trigger has an influence, an afternoon nap results in a higher intensity attack. You’ll find that everyone here will have their own personal experience and many will confirm that the attacks can morph over the years, in cycles and intensity. Disregard the pain levels, cycles, morphing.. the advises of the guys are absolutely valuable: get your fighting meds together and experiment with the different breathing techniques what works best/fastest to abort an attack
  10. @jon019 @Bejeeber full submersion. I do think that vasoconstriction needs to take place on the whole body, with a partial on only the head exposed is maybe not efficient enough and still allows the rest of the blood vessels to be expanded. think it can be compared with a short of sumatriptan that also affects all the blood vessels. the Wim Hof ice baths work in a similar way, but can only take the cold submersion, not the ice baths. neuro said I need to have clearance from the cardiologist as the amount of verap I take is quite high and ice baths may have an adverse effect on my heart
  11. Cast Iron

    Eye pain

    My cluster eye is sensitive to bright lights, not the sun but more like headlights of a car. It hurts when I look into especially xenon light bulbs with a lot of white/blue
  12. I learned that if I step into the cold swimming pool at the onset, within 5 minutes I can abort by inducing vasoconstriction
  13. @Spoinka Returning to your original question, CHFather has posted some time ago an excellent overview of different triggers, ranging from foods to environmental factors that people experience. The link is below. But a trigger does not generally apply to everybody. Some experience a trigger with high pressure atmosphere, some with low, while a third person reacts on the change in pressure. The same with foods, some down a redbull on the onset of an attack, were I am completely avoiding any sugars in my diet as it will trigger an attack. I can not do a afternoon nap where others can. So, different people, different triggers. However, there is common ground on one: alcohol. People also do the 'alcohol test' to see if they are in remission: drink a beer and if an attack is there you are still in cycle. If not...well drink another one or two The overview of CHFather may give you pointers you can use on your own situation and try to see what provokes an attack and what not. Noted by many people is that CH can morph over time, the same for triggers.
  14. @FunTimes How did it go?
  15. I can not answer your questions, but can give you my story which is quite similar. Started as episodic with 240 verap a day. The physical impact is something I noted right away, less stamina, tired, but accepted it. After a while when I was off-cycle I tried to lower the verap, but after a week or so, the hits returned and into a new cycle. This made me causious to try this again. After a year or so I gave it another try, but again the same pattern. But this time going back to the previous dose did not help, I had to up the dose with another 120mg. Eventually my intake of verap became high, 840mg, and I did not want to up this to 960, so the doc gave me two additional medicines, sandomigran and naratriptan. This stabilized the cycle in 2018 with a few hits a day, but in hindsight, this was the moment I got chronic. I use the slow release and what people tell that it stacks in your body is true, but also in my case this is intended. I need to build a medicine barrier quite high to hold the beast at bay, because I have a big and vicious beastie. 2019 I was in the trail group for Aimovig and to qualify had to lowered my verap from 840 to 480. After a week, the hits went from 7 to 10 a day. Not good. Again exactly the same pattern that I had seen before, apparently one can get accustomed to the intake of a medicine quite rapidly. Aimovig did not work out, but the good thing was that my new intake was only 720mg. Last year started the D3 and after a few months decided to lower the verap to 600mg. Definitely not a good idea because I am now in cycle for 14 months on 720mg + the addition meds. My take on this, maybe you can try 240mg slow release to build a barrier during the day, or when you lower to 120mg also consider the slow release with a prednisone tapper. Lowering verap did not work for me, but truly hope it can make a hugh difference for you.
  16. I regularly have spikes on my left temple, while my CH is on my right. These spikes are in many cases the onset of an attack, but not always. It makes me aware that the beast is awake and wants to come out to play. This does not mean I stop doing what I was doing of want to do, except when I kinda feel an attack is eminent, I start the O2. What also helps me when I have a little spike is to go outside for a walk in the fresh air, this also clears the spike quite rapidly. Some people have spikes in the Great Occipital Nerve which is often an indication that they will soon enter into their cycle. I see the spikes on my temple normally only when in cycle, but on the other hand I am chronic. Over time I can now feel what kind of spike it is, is it a random one, or because I have eaten something that is on the ‘NOGOOD’-list or went to bed far too late. As J says, the beast comes in different forms and shapes, where a spike for one is the start of a cycle, where for others it is a morphing of a regular pattern to the next. ATB
  17. I feel very sorry that you had to go through that. Nothing as bad than to see your loved ones go through so much pain and nothing you can do at that moment, and have to wait your turn in the ER. I think we all can relate to your situation. What I would like to suggest is that you need to have prescriptions for the rescue meds. First you need to have Oxygen as a first abortive, its safe, cheap and portable to wherever you go. Using this on the onset of an attack with a flowrate of 25L/m has a high efficacy of breaking the attack. Second, if O2 is not helping to abort, you need to have Sumatriptan injections as your rescue to prevent having to go to the ER. Sumatriptan is a big hammer that will abort and make the pain go away within 5 minutes. You’ll want both of them to make sure you are not dependent on the ER. On very severe attacks, both sumatriptan and O2 can be combined. All the best Alex
  18. @trjonas In the last years I have tried to lower my verapamil and every time I ended up in really bad cycles. It's like my system really needs a certain level of verapamil to keep it at bay. You can also say that I have built a dependency on 720mg (I was on 840 in one bad cycle), and I won't deny that. So I took the plunge into the D3 to hopefully break the dependency and cause I had read so many success stories about it. But like you say, for some it works for others not. Upping my intake to levels above 300...well I have to read up about it because I do not know what the (side)effects might be. But if this works for you, then I could not be happier for you. Cutting a third on your meds does probably mean you'll have a significant part of your normal life back. All the best Alex
  19. Hello Trjonas, No worries, but yes I have a big beast to deal with, constantly and never ending story. As a chronic I try to keep it caged with all the medicines, D3, changes to my daily habits and foods, but it's strong and comes out to 'play' very often. Have to say though that i am getting very tired, but can't let it win. Optimism is a virtue. As for my lab results, the first one is the the baseline, on the second Batch gave his 'blessing' that the numbers were at par: -D3: 64 - 211 -B12: 88 - 128 -PTH: 2,2 - n/a -Calcium: 2,47 - 2,26 -Eosinophil: 0,1 - 0,1 -CRP: 8 - 6 All the best Alex
  20. For every success story there is a counter balance, like mine. After consulting Batch I started the D3 last year March as I was looking for a solution to decrease my intake of verapamil before my next cycle would start. After 1,5 month my blood serums were at par and removed one 120mg verapamil to 600mg daily dose (plus naratriptan, sandomigran), hoping the D3 would keep the beast at bay. What happened was not what I expected, my cycle started and ramped up to sometimes 12 attacks a day. Did the Emgality, GON injection, prednisone but all to no avail. On a certain month I had >240 attacks (pic below). Also my normal cycle was extended from 5 months to a full year now and in between I had to up my verapamil to 720 again. Still I am in the aftermath of my cycle, and actually scared this will roll over into a new one which normally happens around May/June. Alex
  21. Pebbles, got my Pfizer shot last wednesday with no effect on my cycle.
  22. Hello Mr Watts, So good that you have found this forum, too bad that you’re now part of the family. I live in the Netherlands too and there are a couple of things you can consider already. Get a prescription for verapamil as a preventive as long as you do not have O2. O2 is the safest and quickest abortive, but also get some Sumatriptan as an abortive if O2 is not working anymore or the attack is just too severe. If I were you I would change to another neurologist. Mine is Dr. Couturier of the Boerhaave Clinic in Amsterdam who is an expert in this field of CH in the Netherlands. He has helped me tremendously and will prescribe O2 immediately as well as the meds you are going to need. All the best!
  23. Pebbles, as a CCH lets see as I am up for the first shot of Pfizer or Moderna next week
  24. In high cycle I've been using up to 6 a day where i was having 12-14 attacks a day and O2 was just not sufficient to abort. Under 'normal' circumstances O2 should be the preferred option, but in my high cycles the attacks are just too severe and extremely painful. Yes it is absolutely not recommended to take so many a day but it was the only option to get the beast at bay for a couple of hours. Now i am in my lower cycle and use 1 a day (for 5 months already), the others I can manage with O2. As to what @CHfathers recommends to split, nowadays there is also the 3mg available instead of the 6mg, which work also for me in low cycle although they work not as quick as the 6mg. On the other hand with the 3mg there are less rebounds. All the best
  • Create New...